Nicole's Mom

Radha, Here is a link that should get you to links re: medical literature on lyme including lots of condensed abstracts on seronegativity. I hope it is clickable by the time I get it out to the forum. This was sent to me by a fellow Lymie and it seems pretty comprehensive. http://www.lymeinfo.net/lymefiles.html Take care, Bev

Dear Radha, I am still on a break from posting but since I was beckoned recently to give an update on Nicole I started to peek in a bit to see what has been going on. I happened to check today and saw your post. I am deeply moved by what you are saying and I feel compelled to respond to you. I want you to know that even though I have dropped out of sight I think about you and I keep you in my prayers. I think you are a very, sweet, special person. Being Nicole's Mom, I think I have a good idea what you mean by what you wrote. You said: "the thought of change, even a good one, makes you anxious and resistant to change . . ." I think that if you examine this- you might find a lot of information in that one partial statement. In this post where you make this statement you stopped yourself by saying- "it's complicated". I think there is something there within that partial statement that is very, very important for you to really address with all your heart and soul. The fact that you have this self-awareness about being anxious and resistent perhaps is a very important awareness to have. I've always heard that awareness is half the battle. I think it would help you a great deal to speak further about this specific awareness You stopped yourself by saying it was "complicated". I wish that you would have not stopped yourself in the middle of your thought- and continued to write. You have been in your situation for longer than you ever imagined you'd be and you have a rather difficult situation. But it doesn't mean you are stuck. I think for you- over time- what Rita said about taking baby steps is a very useful way to start moving forward. Yet that would bring about change- and this is where your anxiety kicks in. It's like there is a catch-22 going on, maybe??? Thus back to what I was saying - examining the notion of even small change and that anxiety such a thing brings to you would maybe be a starting place for you. Nicole has started keeping a specific type of journal- suggested by someone who understands her - maybe this type of journal could help you. She writes about what it would be like to get better. What does she imagine it would be like. I feel so much compassion for you Radha. I know your situation has not been easy. Again I encourage you to find the words to express what you really feel deep down about that anxiety you described regarding change even a good one- even if you do it privately. Of course this forum is a very safe, warm, encouraging place to express yourself. But either way- I hope you carry on with that thought process. I hope you don't think I am being pushy or sounding like a know it all by what I wrote. It' just that I was so moved by what YOU wrote and I do believe I understand where you are coming from. Sending Best Wishes, Beverly

Hi everyone, Thanks so much for your concern. I have not written in such a long time. I hope you don't think we have fallen off the face of the earth. I have just received a couple of emails so that's why I knew this thread had been started. Gena, thank you for writing in our behalf. Geneva and Calypso - thank you for inquiring about Nicole. I had to take a step back from writing on the forum for several personal reasons. But just to update you - Nicole has been taking a naturapathic route for a while now and time will tell if this will work for her. She is still not in the greatest place with this illness- yet she has a strong belief in this way of operating- the natural way. Presently she is in VT where there is a clinic that deals in Biological Medicine. She is at a bed and breakfast and goes to the clinic for about 2 hours a day. The treatments are mild. She has had someone with her so that they can drive her there each day and bring her back to the B&B. She has great hopes that this effort will pay off for her. Nicole will be home Friday night. This is the first attempt she has made to travel anywhere outside the house since her relapse back in Sept. I hope it is a sign that she will be willing and able to travel elsewhere - she says that in time she intends to take a more integrative approach to her problems. I want more than anything for her to improve and get to a better place. I am using this time with her away to try and recoup some of my energy. We have eaten out a lot or have done take-out. I have only cooked once!! Although I have not been present on the forum I think about so many of you and miss you. You are indeed a wonderful group of people- the best- so caring and supportive and intelligent. For now I send you love and hugs and best wishes. Beverly

Hi Steph, You sent me a forum message which was so sweet of you and I did send you off an email reply. But then I re-read your forum message and I was unable to determine if it your computer was up and running or if you are waiting for it to be fixed still. If it's still on the blink just so I'll know- perhaps you'd like to post your answer here. Okay- don't want to use up anymore forum space . . . Thanks again for trying to get a hold of me. Bev

Hi Steph, I just sent you a quickie email. I hope your computer is fixed soon. Thanks for seeking me out. Best wishes, Bev

Hi Emily, I'm so sorry for all the bumps in the road. I have thought about you a lot and keep you in my prayers. Keep watching good movies- funny ones if you can - as they say "laughter is the best medicine". In spite of everything- this slow recovery, etc. it sure sounds like you indeed will feel so much better than ever once some time has gone by. Feel better really soon. Sending hugs, Bev

Emily, I knew you had it in it. Three cheers for your bravery and the success of your surgery. Now without that gall bladder bugging you- you will feel much, much better!!! Take care, Bev

Emily, You will be in my prayers for your surgery tomorrow. You will do fine. Bev

I have often tried to come up with a way to verbalize or a sheet of paper explains the basics of dysautonomia. For instance we are working with a couple of psych counselors ( another story) and it is so hard to explain the ins and outs of dysautonomia. I feel like it would be helpful to have some talking points which some days they are there and some days they elude me. I have alway found it difficult to explain the picture. And I know that each picture of everyone is individualized and maybe I'm just overwhelmed and get inarticulate and also feel like I need about 1/2 hour of the other person's time to explain and that they have to be good listeners and interested- it could be anybody that I want to explain what's going on. Then maybe in our world the scope of the problems are larger than the Nicole's illness per se ( another day, another post ) and maybe I don't know what the cut off point is. Anyway . . thanks. . . .just rambling now . . . Bev

Nina, That is enlightening. Thank you for responding- (I am trying to educate my husband with personal experiences now since presenting him with literature isn't quite doing the trick in getting him to grasp the seriousness of hypovolemia. And if we are to work as a team- to further enlighten Nicole- I need him to understand"). So my question is if you weren't as diligent as you are- what do you think your life would be like? I might add that having read all your posts since I've joined (and going into your personal website, etc) -that it is clear as clear can be that you do everything humanly possible to make your life as functional as possible. And I must say that I admire you so much for all that you do and the way you have taken the bull by the horns (as as so many on this forum). Thanks in advance for your next response to my new question. Bev

Nina, I hope you are sleeping as I type this out because you went to bed so late after having been in all that pain. I'm sorry that you had to pay such a high price. It sounds like it was pretty tough as you hardly ever vent. I hope the drugs you took helped you and it is toned down and that today is a better day for you. Bev (By the way- I asked you a question under the post by Ramakentesh re: hypovolemia and kidney problems).

Nina, I know this sounds like an elemental question . . but by "chronic" state of hypovolemia for yourself in particular- do you mean that you are "continually"low on fluid volume or do you mean that you are able to keep yourself hydrated "enough" but it is always a battle? Thanks, Bev

tearose, me again. I have it printed up already. Thanks again for putting it separately. You are the most thoughtful person . . . Thanks again so much, Bev

tearose, Thank you. That was a so quick. It is the exact poem that I was looking for. I wondered if you might be the very one to make it appear. Thank you for putting it there separately. I am most grateful to you!!!!! Thanks with all my heart, Bev

Emily, I couldn't think of much more to add than what's been said except that time goes so fast- soon it will be a month from now and you will be looking back and being so glad that it's been a month already and that you are feeling so good and well-nourished too. Also I thought you could use a couple of very silly jokes. These are from Nicole: First Joke: A skeleton goes into a bar and says "I'll have a beer . . . . . . and a mop!" Botta bing botta bang Now for the second joke (which has been modified a bit to fit your latest experience with that stupid doctor): How many stupid doctors does it take to make chocolate chip cookies? The answer is two. One to mix the dough and the other to peel the M&M's. Botta bing . . . Anyway- take care for now. Hang in there. Bev

Hi. I was wondering if anyone knows of a "poem" about walking down the sidewalk and falling into a hole. And then walking down the same sidewalk again and falling in the same hole and it goes on a few times like this- walking and falling in the same hole and then eventually the person realizes that they could walk down a different street where there is no hole. I could really use this "poem" right now for "someone special" in my life if anyone knows it in its entirety. Thanks so much in advance to anyone who could provide it. Bev

Mary, Sorry to come in so late in your post. First of all- I want to tell you that I think you are a great mother and I am so sorry that you are having so many obstacles and stressors and that you feel so worn down. Since some obstacles and stressors can be resolved and some can't, I am thinking that the advice you've gotten about getting some counseling even if it for yourself- however you can get it- is the best advice here. Because your daughter needs you to help her- and you are the main one- with that husband of yours so "absentee". You might not be able to drag him along but you need it to keep your spirit from feeling so "tired". You have a lot on your plate and a counselor can help you sort out what can become better and what may have to remain challenges. You can also get some coping techniques. My strongest advice is to put your energy into this counseling for yourself so you will have the energy to deal with your daughter's illness which sounds very complicated and she is in a lot of pain. I hope her PCP can help you to get your daughter the best care possible. Beverly

Hi Stacey, That was my post and I'll tell you about the rash since then. (Thanks Emily for pointing out my post in my absence for Stacey. Oh dear. If I was here earlier I could have saved you the effort, trooper that you are.) Anyway, Stacey, yes that post had some good and varied responses. After that post Nicole's rash went away over the course of a couple of weeks or so. She had a rash back in 1998 too- and our dermatologist had no idea what that was. Sometimes they don't know. For this rash nothing had changed in diet or detergent. And then not to confound matters but a few days after Nicole's rash began I got one but not as widespread as Nicole's was. But itchy it was. I never get rashes and I don't have POTS. Mine took about a month to go away. Anyway- sorry I couldn't be of more help except to confuse you. I'm so sorry that you are feeling so crummy in general. I hope your rash goes away soon and I hope your doctor is of help with your neck pain and headache. Take care, Beverly

Emily, I want you to know that I have continued thinking good thoughts for you. I'm sorry I have not logged on in a couple of days but I have just read everything. I won't speak my mind about the horrible doctor who put you into tears but I will speak about your bravery to stand up to him and your fortitude to carry on and get to the next surgeon. You are a shining example of someone taking care of your own needs in spite of so much going against you. You have been through so much and now you have this kind surgeon and your POTS doc is in on it and it certainly seems like you are on your way. You have been through the hard part. The rest will probably seem like a breeze in comparison. I am so proud of you for the way you fight for yourself. And I believe, as I've said already, that you stand a good chance of feeling much better than you have felt in a long time once you get that naughty "gaul" bladder out of your "system". Take care and sweet dreams. Beverly

Hi Emily, I think you are going to get through this surgery with flying colors - you have received an enormous amount of wonderful advice from the "pros" on this forum and it sounds like you are going to ask a lot of questions. You have read past posts and it sounds like you will be well prepared. I've been thinking a lot about what to post myself as I don't know a lot about POTS and surgery. However - I did think of something that hasn't been mentioned that I've heard it happens sometimes and I thought it would be good to mention it. There is sometimes a possibility and this is only likely if you go out of your town to a bigger hospital- like a teaching hospital whereby- sometimes - surgeons allows a student/ resident to perform or help perform O.R. procedures while the surgeon oversees. I'm sure that you would not want this and you might want to ask about this ahead of time of your surgeon. Also, I liked a suggestion that you got along the way to make sure the surgeon has performed hundreds of gall bladder removals. It is such a common procedure but you might want to make sure the person is very experienced. Again, still and always thinking those good thoughts. . . Wish you felt better now and not so green but after that gall bladder comes out you'll probably feel better than you have in a long, long time. Beverly

Emily, I'm glad you got the answer. Pooh on that doctor who said IBS. I'm glad you have something that can be fixed- yet sorry you have to go through the "procedure". Already thinking good thoughts for you, Beverly

tearose, I don't know about muscle wasting. But I am posting because I want to say a bit about you. First to repeat what Emily has said about your spirit. You have an amazing spirit in spite of all that you deal with. You are indeed a blessing to this forum. You are accepting yet not resigned. And you show a lot of courage. There is a lot to be learned by reading your posts in the way of these attributes. Beverly

Nicole came up with another movie last night- from the silent era! Charlie Chaplin's "Modern Times." It is really, really funny. It's silly. Beverly

Emily, Nicole gets Netflix too. She gets Seinfeld episodes and Curb Your Enthusiasm episodes as well. I just read an article about the guy who started up Netflix after, in 1997, returning Apollo 13 late and with a $40 late fee. He was so disgusted - he came up with a better, more appealing way to rent movies. And now he has well over a million subscribers (maybe more- read it the other day but can't remember). I do have 10 movies Nicole listed to present to you. You may have seen each and every one. (I came up with the 11th). Here they are: 1. Antonia's Line (Dutch) - I think it's one of her favorites. 2. American Movie 3. Eternal Sunshine of the Spotless Mind 4. In America 5. The Professional 6. The Doctor 7. The Hours 8. Sex, Lies an Videotapes 9. Le Petite Amour (French) 10. Magnolia 11. Amelie Hope you have a good night without any "events". Sleep well and goodnight. Beverly

tearose, Thanks for your kind response and for sharing your story about what overhydration can cause. I'm sorry that you had the reaction to the water but I'm glad that you were able to learn of your sodium depletion and your overhydration tendency. Thanks for helping me understand even more about the subject. Thanks again, Beverly